When the phone rang during school hours, my heart would skip a beat as I wondered if it was the school office, if Julian had had a reaction. Like a low hanging cloud, the worst case scenario permeated my thoughts: anaphylaxis can cause death.

Strangely enough, my perspective on life-threatening allergies began to change for the better after I read a landmark study, published in the New England Journal of Medicine, about 13 children who had died or nearly died from food-induced anaphylaxis. Not light bedtime reading, but the article drove home why food-induced deaths occur: typically, victims had unknowingly eaten something to which they were allergic, did not have an EpiPen readily available, and most were asthmatic. These findings made me realize that I had missed the operative word in the definition of anaphylaxis – it has the “potential” to cause death – but fatalities are rare when measures to reduce the risk are carefully followed.

My husband and I conditioned Julian to carry his EpiPen, to not eat without it, and to only eat foods we had approved. We learned to be label savvy and to call food manufacturers when we were unsure of ingredients. I took on the role of educating others about anaphylaxis and what to do in an emergency. But in the early years of Julian’s diagnosis, I also learned the hard way that people sometimes did not “get” his allergies because of my anxiety-ridden behaviour. One time the mother of a classmate cancelled a play date with Julian after I abruptly corrected her technique when she demonstrated how to use the EpiPen with the EpiPen Trainer. My tone said: “This is simple to use and if you don’t know how to use it properly, he could die.”

After closing that door to my son, I became aware that my perspective of anaphylaxis, the way I’d labelled it in my head, was having a negative impact on my attitude and behaviour and, in turn, on Julian’s. I made a conscious effort to view others more positively; to understand that when you’re respectful, patient and realistic, people have a much easier time learning how to protect your allergic child.

Julian now knows how to live with his allergy. Even though many people call his school ‘nut-free’, he understands there is no such thing, that there are no guarantees. Despite increased awareness, products with peanut and nuts do slip into the school. Julian knows that he’s not in danger unless he eats something he’s allergic to and does not have his EpiPen. He knows that the smell of an allergy-causing food such as peanut butter will not cause him to have a reaction.

Now 11, my son has developed more allergies since his peanut allergy was diagnosed. People are often shocked to hear that, in addition to peanut, Julian’s list includes tree nuts, shellfish, chick peas, split peas and, most recently, soy. This makes them label my son. Poor kid, they say. What does he eat? I tell them, please don’t pity Julian. He’s a healthy kid with a healthy appetite. He just has to be careful about what he eats.

Food allergies take the spontaneity out of life, but they do not define my son. Julian has a joie de vivre, a real zest for life. He is an aspiring hockey player, an avid outdoorsman, a pianist (under duress) and a friendly boy (except to his kid sister). He knows that anaphylaxis can cause death, but also that it can be managed. He sees himself as a child, like any other, who just happens to have food allergies. Now that’s a label we both can live with.

Laurie Harada is Executive Director of Anaphylaxis Canada, www.anaphylaxis.ca

Published in Allergic Living magazine, Summer 2005
© Copyright AGW Publishing Inc.

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Today, Sean Randall, a 43-year-old artist, thinks it’s in a drawer somewhere. I always ask him if he has life insurance since Sean has allergies and asthma, the combination considered the most high risk for life-threatening reactions. A severe asthmatic as a child, he spent time in the oxygen tents, and now takes the controller drug Advair daily.

He has been coping in his own way for years. As a student in boarding school in Winnipeg, he never ate toast because the knives had been in peanut butter as well as jam jars.

“You manage,” he says. “You learn breakfast is cereal, you learn self-discipline.” Sean once ate a peanut by accident in a restaurant with low lighting, and had an anaphylactic reaction. He added to his strategies: “be more vigilant when eating in darkly lit restaurants.”

Rather than carrying an auto-injector, he figures a call to 911 will save him in a crisis. “It’s less of a decision and more of laziness. If you don’t use something for 20 years, it doesn’t seem necessary.”

Largely, he relies on avoidance: no peanuts are allowed in their house in Regina, and he doesn’t go to restaurants, such as Thai eateries, that use peanuts in the kitchen. He also avoids bake sales and has learned “the hard way” which chocolate bars will set off a reaction.

Still, my sister and I hope to wear him down yet, and finally get that prescription refilled.

Reprinted from Allergic Living magazine.

Related Reading:  The Allergy Deniers

There’s just one problem in paradise: Koentges is allergic to tree nuts. While he’ll sometimes let restaurants know that he can’t have nuts in meals he orders, mistakes happen about once or twice a year.

“I think, ‘Oh crap’,” he says of recognizing the flavor of nuts. He knows the next hour or two will be filled with intense stomach pain, hives and swelling.

His strategy? To wait it out. Cautious parents of food allergic children will be stunned to learn that Koentges does not own or carry an epinephrine auto-injector. He admits that if a food looks particularly intriguing and tasty, he’ll take a chance and try it. “It’s a pretty stupid approach to it, I am a stupid person,” says Koentges. “I’m kind of cavalier about things.”

In fact, he’s savvy, talented – and in good company. There are large numbers of adults with potentially life-threatening food allergies who do not carry auto-injectors, are not vigilant food label readers and are unlikely to be found wearing MedicAlert jewelry. Almost everyone knows someone – a colleague, a friend – who has been diagnosed with a food allergy but believes that he or she doesn’t need to carry an auto-injector because the allergy is “mild” or “moderate”.

These people lack the understanding of the disease to appreciate that symptoms are not consistent; that a mild reaction today could mean full-on anaphylaxis the next time (complete with problems breathing and a dangerous drop in blood pressure). So they go about their lives taking few precautions for the condition, blithely ignoring or dismissing the fact that they are standing on the precipice of a few mistaken bites or a sting, and unprepared if a big reaction does arise.

Surveys reveal that adults with food and stinging insect allergies are far more likely to take risks than parents would take with an allergic child. “We don’t see this behavior from parent to child. It seems to be an adult phenomenon,” says Anne Muñoz-Furlong, the former CEO of the Food Allergy & Anaphylaxis Network (FAAN), who has been involved in allergy research. “We often say that teenagers are risk-takers, and they feel like they’re invincible. But I hear more stories of risk-taking from adults than I do from teens.”

New studies on adults with food allergies are telling. The qualitative research firm Fresh Squeezed Ideas Inc. last year examined patient attitudes about anaphylaxis for King Pharmaceuticals, the makers of the EpiPen auto-injector in Canada. The firm surveyed 650 participants, dividing them into two main groups – those a physician had diagnosed as food or sting allergic and those who were labeled “at risk”. The latter group had experienced symptoms clearly consistent with such an allergy, but had not been formally been diagnosed.

In the “at risk” group, only 4 per cent owned and carried an auto-injector, compared to about half of the diagnosed group. As well, 65 per cent of those “at risk” believed an antihistamine would always clear up allergy symptoms.

In FAAN’s 2004 survey of seafood allergy prevalence, auto-injector findings mirrored that “at risk” group. Only 8.6 per cent of those with a seafood allergy, which affects over six million Americans and is largely an adult affliction, had an auto-injector.

Fresh Squeezed Ideas’ research revealed a shortlist of the reasons for not carrying an auto-injector:

• Most of the “at risk” group thought only people with “severe” allergies required one, and distanced themselves from that label;
• A significant majority (in both diagnosed and at risk groups) also believed strongly in their ability to avoid allergens.
• A lot counted on their family physician’s advice and if the doctor hadn’t mention a prescription for an auto-injector, the patient didn’t ask whether one was needed.
• Several also expressed confidence that there was good awareness about food allergies in society in general and at restaurants – and drew the assumption that this was adequate protection.

Next: Life on the edge of a dormant volcano